Thank you for reading this blog. Greetings from Japan! We hope you are all doing well and enjoying your weekend.
I have much to report but will be brief, as tomorrow is another big day.
Well, Ana and I immersed in Japanese society after a quick and easy 10 hour flight. We were greeted by Adachi san, a father of a CF young adult, who took the Shinkansen for 2.5 hours from Sendai just to meet us. We walked out of customs, went to a corner bench, and unloaded half our luggage worth of “CF souvenirs”. Then Adachi-san gave us 30000 yen, or $300 for a taxi drive to downtown, because he didn’t want us exposed to germs in the bus during rush hour! We of course denied the money but he insisted, and we eventually got to our hotel, despite the taxi driver getting lost.
Yesterday was just unbelieveable. Adachi-san returned home to Sendai Thursday night, and then returned in the early morning to meet us at the Japanese Parliament. He had set up a few meetings with members of the House of Representatives who are helping the Committee to Enable CF Treatment in Japan. It was just mind-moggling to think we are here, in Japan, lobbying! How did we get here?
We had productive meetings sharing our story and offering ideas for the next steps. We heard that 340 medicines were reviewed because they are not available in Japan. Only 120 medicines were accepted for review by the government to pursue use in Japan. Last week the Ministry of Health made a statement that 4 of those medicines are TOBI, Creon, Pulmozyme and Colistin! Four meds for CF! And with so few patients it was just remarkable that the Ministry of Health has supported the Committee’s pleas.
We had sushi bento lunch in the Parliament dining hall, a beautiful modern, Western-style building. This is where the key politicians eat, including Prime Minister Hatakeyama! Then we met the Minister of Health in charge of licensing and drug approval. He was a Harvard-trained MD MPH… pretty impressive. I was again shocked that we were here, in this place, speaking with the person who basically holds the key to CF treatment in Japan. So many children and adults’ lives are in his hands…
In broken Japanese, with my mom’s help, Ana and I rattled off all the possible ideas we could think of to suggest ways for drugs to be available to CF families. I’m grateful that the US system is so resourceful and flexible, offering all of the ideas that we could share. As usual we talked too much and for too long, but they got the point. The sense of urgency was clear and we didn’t hesitate to put in a very emotional appeal for CF care.
After the meetings at Parliament, Ana, Mom and I went to Tokyo Station to buy our rail passes. We stopped to eat the most delicious green tea dessert ever- green tea anmitsu (jello). It was to die for!! As usual, at the train station, there were ant-like swarms of people in black suits speeding by in every direction. Yep, we were back in Japan!!! The 4 C’s: chaotic, crowded, commercial, confusing. God bless it, but I couldn’t live here. The pace was just insane, the bright lights, noise, the stimuli was just overwhelming. Ladies would screech in a high pitched nasal sound to welcome us into the store, and we’d turn around and leave instead. Mom went to sit down, and Ana and I went to a shopping area of the train station. Seriously, there was store after store of cartoon-character chachkies- keychains, hankerchiefs, pens, erasers, booklets, the most random things- all covered in colorful, busy cartoons. All the stores looked like the same after a while!
Eventually, we met up with the Nakamura family. My dad has been friends with Professor Nakamura, another plasma physicist, for the last 30 years. We went to the all-time most delicious sushi restaurant I’ve ever been to in Shimbashi. Ana and I embarrassed ourselves with our appetites. Everything we ate was raw except for the okra sushi roll— ymmm! The toro (fatty tuna) literally was like butter and just melted in my mouth. No Californian/US sushi can even come close! We enjoyed catching up with these adult children with whom we played when we lived in Japan in 1980. They were genuinely fine people.
Today is Saturday, May 15. What an incredible day! Today was the kind of day where you get to meet all the important people from one corner of your life. Ana and I went to the “Bridge of Life Day” event in Ochanomizu, another event put on by Japan Transplant Recipient Organization. This was a gathering of Donor Families in Japan, where we prepared a 30 minute speak. Mr Ohkubo, our host and sponsor, invited us back to Japan just for this event. So many familiar faces greeted us like we are officially part of this transplant family. What an honor. It hardly seems like we are foreigners. I feel so much love and care for these people, like the cultural differences don’t matter, because we just ‘get’ each other and what we’re trying to do.
Mr Tanaka, a donor father, gave a powerful tear-jerky speech just before ours. He showed a video of his daughter skydiving shortly before she died in a car accident. This 27 year old was so outgoing, cheerful, happy, smiling and waving at the camera. So much life-energy, that was lost too soon, but was passed on to 7 people because she had a donor card. If all donor families can speak and advocate for organ donation like Tanaka-san, then Japan would not have an organ donation problem!
During his speech, I got very emotional and thought, “How am I going to give a speech now?” Fortunately, Ana and I managed with just a few slips here and there. But many people really enjoyed our talk. Thanks to Robin Modlin and our friends who are post-lung transplant, we presented donor families with prayer flags that we all made together. They were very touched.
After the speeches we watched a concert put on by Momoko Ishida, a singer who also performed at the Transplant Awareness Concert we attended last October. As usual, afterwards, Ana and I were hounded by friendly people wanting to talk about their experience, offer us gifts, or praise our speech. Thankfully, we were lucky to see non-transplant people. My cousin Yuki came, my mom’s friends, and even my uncle’s best friend was there. My publisher colleague, Oyama-san, was also there.
I felt very comfortable with this Japanese transplant community. Most of the people had gone to the Japan Transplant Games, so we had met before. With my limited Japanese, I was generally able to communicate and that makes all the difference. This was full-immersion and I could hardly think in English.
A number of recipients got together and we went out for dessert. As usual I ate too much but loved this fabulous Green Tea Parfait! Oh, Japanese have the BEST desserts! It had whipped cream, a cake wedge, mocha, red bean, fruit, corn flakes and green tea ice cream! Oh!! I spoke with a 20 year post-heart recipient who had a transplant when she was 7 years old, in Utah. She feels “American” and wants to move to the US. So many people love the freedom and opportunity and yearn for it. We had such a powerful conversation.
Straight after dessert, I went to a dinner party put on by Ohkubo-san and the rest of the Japan Transplant Recipient Organization organizers. I can’t exactly tell you what I ate, but most of it was good. There were about 20 little dishes of roots, fish, random vegetable parts, etc. And the beer was great too. I had a great conversation with several of the people, most of them recipients. The 10 people sitting at the table, including Dr Fukushima, renowned heart transplant surgeon, basically were completely in charge of changing the Japanese organ donation situation. The task is overwhelming but it’s moving in the right direction. Ohkubo-san, who may have had a bit too much to drink, started to praise our speech to such an extent that he started to state all the future events he wants us to be part of! We got a bit overwhelmed…… Nonetheless, he wants us back next year. Hooray! Dear God, please keep us healthy so we can do this work! It feels like a lot of responsibility to help the Japanese help themselves.
Okay, it’s late and we need to wake up early to head to Takamatsu. My whirlwind tour of Tokyo has come and will soon be gone. Next… I wish I could stay but then I know I’ll only spend money.:)
Please, if I may, pray for Ana’s and my health, as Tanaka-san was very sick, coughing and sneezing and I pray we don’t get sick. It’s so annoying.
I’m not writing very eloquently or in any articulate way due to fatigue and time, but I wanted to quickly post to share what has been going on. Two very very very full days of real meaningful activities. In a few months I’ll be laying in bed thinking about today and wondering, WOW, HOW DID I GET SO LUCKY? I truly believe that I’m being kept alive by a force much larger than myself, precisely for these purposes.
Have a great day and thank you for your support for our endeavors.
Love and hugs, Isa